Lyme Disease is a life changer, for sure. I understand your frustration.

I would just encourage you to find something that you trust for treatment and then stick with it through the herx's. An LLMD or Naturopath could help greatly to keep you on track, especially when a herx arises. I never worked with an LLMD as I chose a different path to healing, but if you opt for some type of allopathic therapy then your best bet is the lyme specialist, even if you have to travel.

But back to your herxing. From all your reading here I'm sure you know that a herx is a good thing as it indicates the treatment is working. But you need to be detoxing when these occur. For me (and most), this required a truck load of potions to get me through them. Different potions for different ailments. This is where these forums and research are so important - to learn what has worked for others with similar symptoms. Oftentimes I did feel worse from addressing the herx, even feeling like I was at death's door, but this is when it's important not to give up. Better to back off a bit than stop treatment altogether because if you stop you're just giving the spirochetes another chance to flourish. If they gain a foothold, it's like starting all over again!

I have had LD for as long as you, probably about 10 years longer. I think I am about 90+% healed but I still do a maintenance dose of my treatment every day. Once you reach a chronic stage of LD it becomes more difficult to completely eradicate the critters. LD is then a bit like Malaria in that certain circumstances, like stress, diet, etc. can bring the symptoms to the fore. However, usually at this point they are mild symptoms. This has been my experience, as well as others I know in a similar stage of healing. But this necessitates going through all aspects of the treatment. In doing so, it will get better! Hard to believe, I know, when you are where you are right now.

It was lyme buddies who kept me from going off the deep end. Just knowing that so many others were experiencing exactly what I was helped tremendously in the encouragement department. This is why I continue to post here. Maybe there is even a physical support group in your area?

I know you didn't ask for advice so I hope you don't mind hearing this. It's just that I felt your frustration because I have known it as well. There is hope. There is help. Don't give up on yourself MM.

Jen

thanx jen! i am definitely seeking advice and help and appreciate your comments and sharing your experiences which helps us all...

Music mafia
I got a message that we can't post emails on here. So I sent you a friend request and added you to my contacts. I don't know how that works. Anyways, I will just keep
Checking in to see how you are doing
Annalisa

i was in a terrible cycle that had been @ 4 weeks straight...my wife had to drive me to san diego to meet with the llmd because i was too out of it to drive...i felt like i was going to die in the office....the md gave me prescriptions for 3 abx and said i was just gonna have to bite the bullet and get through the herx of the abx...oddly, before even starting the abx, i woke up the next day feeling better so i think the bad cycle was in was from the EBV which can go dormant overnight....i probably should have given myself some more better days but instead i went ahead and started the first abx, zpack...the last time i took it for 6 days, felt better for 2 days then crashed hard from herx...the md says keep taking the abx every day so im gonna try. today is day 2, long hard road ahead..thx for your support

It's weird how our bodies know how much we can take. There have been days when I literally prayed that I would die Then the next day I would wake up and be a little better.
I am out of those horrendous days, but still have moments where I don't feel good.
Yes, if I were you I wouldn't stop taking your abx. Power through the herxes. When I herxed on the zpack I thought I was having a heart attack. But I never stopped taking any of them. It is so hard to wake up every day and feel horrible, but if you stay with the treatment you will notice a difference.
Be sure to detox. Drink lots of lemon water. Take epsom salt and hydro peroxide baths.
Did your dr. give you any supplements? I think my supplements have really made a difference too. Hopefully you can take some.
I'm sorry you are going through this. It is one of the toughest journeys to be on.
Keep me posted.

started the abx @ 1 week ago....no real change yet, not herxing yet...does it matter what time of day i take the abx? i was taking in AM but seemed to cause some stomach distress and minor palpitations so i am now just taking all my supplements and probiotics in the AM and taking the abx after dinner and in theory sleeping through the side effects...i seem to feel best first thing am now....

Wow - that is great you don't feel too bad
I don't think it matters when you take your abx. I take so many throughout the day so prob doesn't matter what time. Just as long as away from probiotics. I'm glad you don't feel so bad. That is great hopefully you won't. Are you able to work?

Hello,
So sorry your feeling so bad. I too have a very similiar story. My journey was long and took it's toll as well. It sounds like you may have something that is keeping you and your immune system from improving. I saw a very awesome Nurse Practicner that was very knowledgeable in lyme. She saved my life! I too was on antibiotics for quite sometime and I wasn't improving just got to a certain point and couldn't improve. She said some of her patients weren't getting better cause something was interfering. For instance, do you have any mercury fillings in your teeth? I saw a natural homepathic dentist and he said all metals must be removed. I had a drastic improvement when my mercury fillings were taken out. "Who would have thought". I have been diagnosed with Autoimmune and Autonomic disorders. I am positive that this has been a factor in my decline of health. I had those things since high school. I'm 52 now. I am now doing a yeast cleanse which has been a great help and relief. I'm improving every day. You must drink lots of water to cleanse the body. I have one lemon or lime in water every day. The body will heal it's self if we let it. The yeast cleanse I'm using is from Renewlife. It's awesome. I wish you better days ahead. Good luck.

Wow - that is great you don't feel too bad
I don't think it matters when you take your abx. I take so many throughout the day so prob doesn't matter what time. Just as long as away from probiotics. I'm glad you don't feel so bad. That is great hopefully you won't. Are you able to work?

last time i only took the zpack for 5 days and then got real sick on day 7 or 8 after i stopped the abx, prob herxing....i am now taking it every day only 250mg but they want to add 2 more abx which i havent started yet....ive been working from home a while now and able to get prioroty stuff done but years behind on all else

Hello,
So sorry your feeling so bad. I too have a very similiar story. My journey was long and took it's toll as well. It sounds like you may have something that is keeping you and your immune system from improving. I saw a very awesome Nurse Practicner that was very knowledgeable in lyme. She saved my life! I too was on antibiotics for quite sometime and I wasn't improving just got to a certain point and couldn't improve. She said some of her patients weren't getting better cause something was interfering. For instance, do you have any mercury fillings in your teeth? I saw a natural homepathic dentist and he said all metals must be removed. I had a drastic improvement when my mercury fillings were taken out. "Who would have thought". I have been diagnosed with Autoimmune and Autonomic disorders. I am positive that this has been a factor in my decline of health. I had those things since high school. I'm 52 now. I am now doing a yeast cleanse which has been a great help and relief. I'm improving every day. You must drink lots of water to cleanse the body. I have one lemon or lime in water every day. The body will heal it's self if we let it. The yeast cleanse I'm using is from Renewlife. It's awesome. I wish you better days ahead. Good luck.

kat, im glad you are feeling better!! ive got plenty of old mercury fillings and dont like it but ive had lots of metal testing done and none of my drs feel that it is my problem. doubt i could go through the pain and cost of removing them but glad to hear from someone who did it and glad it helped, you are braver than i am , i hate dental work haha. i am familiar with the yeast cleanse product and i am drinking my lemon water (ive come to like it) and taking lots of supplements and probiotics. thx again M

What are the new abx you are starting? At least you are able to get some work done. Lyme disease throws our whole life for a loop!
Hopefully you will do ok on the new ones.

havent really researched the other abx yet but the prescriptions are for plaquenil and omnicef...i am allergic to any type of penecillin so cant take some abx...dr wanted me to start the others in 1 week but i am giving it a couple weeks then will add one and so on..that way if one disagrees with me i know what it is and can replace...